“If I’m not me, I don’t want to be.” That’s the motto of a healthy man in his 80s who was interviewed some years ago by the New York Times. I’ll refer to him as Robert.
Like many people, Robert dreads the possibility of getting Alzheimer’s, which is a fatal disease. But it’s not death he fears; it’s lingering disability, especially cognitive decline. He wants to go out on his own terms—terms he has specified in a mostly untried kind of advance directive, of which he is a fervent proponent. It is known as SED by AD, short for Stopping Eating and Drinking by Advance Directive.
“I don’t want any church, the government, any doctors or hospitals or even my family to contradict what I want for my death,” he says.
If he develops Alzheimer’s or another dementia, Robert directs that food and water be withheld from him at a certain stage in his disease. He orders his health care proxy—a family member—to prevent anyone from spoon-feeding him or offering him liquids.
This type of directive, much debated by bioethicists and legal scholars, came into being because of the unique challenge dementia poses for the right to die. I think it’s a flawed solution, which can’t meet that challenge.
People with late-stage dementia have long had a right, through their proxies or previously drawn up health care directives, to forego ventilators or feeding tubes. And almost all have Do Not Resuscitate orders.
But typically, none of those comes into play in the end stage of dementia. Patients aren’t kept alive or rescued by heroic measures. There is nothing to unplug and no way to avoid prolonged dying. The disease slowly runs its course, making victims more and more dependent on the care of others. Eventually they need to be hand fed.
Meanwhile, methods of hastening death have become more available to competent people.
For those who are terminally ill and have less than six months to live, medical aid in dying (MAID) is now legal in nine states and DC. In those places, if you qualify, you can ask a doctor to prescribe a lethal drug, which you can take when you are ready to die.
But the rules for qualifying pose impossible hurdles for people with dementia: you have to be mentally competent and able to take the medication yourself—no one can help you.
By the time someone with Alzheimer’s is six months from the end, he (or she) can meet neither of these requirements.
Another way a terminally ill, competent person can hasten death is by Voluntarily Stopping Eating and Drinking (VSED). The patient succumbs in anywhere from a few days to a couple of weeks.
This sounds simple, as though you could do it yourself without involving anyone else. That’s a false impression because it’s not easy and you can’t do it alone.
The context in which VSED most often comes up is palliative care for people with end-stage diseases, like stage-four cancer. It is used to hasten death.
Thus, the patient already has in place a team to evaluate his suffering. They can see if improved pain management would be a better solution for him, or if his fears could be allayed by honest answers about what he can expect.
But even some palliative care experts themselves don’t agree on the ethics and legality of VSED. While some are concerned that it constitutes assisted suicide, most feel that it is justifiable if it relieves suffering.
It takes great determination to carry out VSED. If dehydration causes delirium, you may forget your intention and beg for a drink. Therefore, you need a caregiver who won’t give in to your pleas, and a physician who can step in to help manage thirst and delirium.
The misconception that VSED is an easy way out led to the search for a way someone with dementia could use it.
People in late-stage dementia aren’t capable of deciding to die by VSED, much less carrying through on the decision. Hence, SED by AD: an attempt to accomplish the same end through advance directive. But that corrects none of the problems with VSED, and it adds other problems, some of them due to misconceptions about dementia.
In his directive, Robert stipulates that if he develops dementia, his family—or other caregivers, if he is in a health care facility—should withhold all food and drink from him when three out of his list of 10 conditions are met: when he can’t recognize family members, for example, or when he can’t articulate coherent thoughts and sentences.
People who are worried about getting dementia often cite not recognizing family members as a kind of dividing line, as though after that, those who have dementia are no longer worthy of our concern.
But recognition isn’t black and white. One day the person doesn’t know who you are, the next day she does. For many months—even years—she may know most of the time that you’re someone she loves but doesn’t know your name or your relationship to her. She’s usually not upset about it, unless you are. (See my blog “Does She Still Recognize You?”)
That ambiguity would make it very difficult for anyone to decide when the lack-of-recognition criterion is met.
Robert’s other condition for activating his plan—when he can’t articulate coherent thoughts or sentences—is likewise ambiguous. It comes from a misconception that problems with speech always equate with problems in thinking.
Yet take the example of Alison, who is in late-stage dementia. She rarely speaks, but she is alert to the needs of others at the Alzheimer’s day program she attends. When she sees someone who seems sad, she goes and sits by him and holds his hand. With that nonverbal gesture, she shows she can not only think, she can feel and show empathy.
Expecting SED by AD to guarantee you the death you want is premature at best, because it is not fully legal anywhere in the US. Some states ban it outright and others restrict it. Thus, an obvious objection to Robert’s plan is that he almost certainly would be putting his family and/or the facility and its staff in moral and legal jeopardy if they were to accede to his wishes.
There’s also a difficulty inherent in all advanced directives: we humans are generally bad at predicting how we would feel in circumstances we have not yet experienced.
Reading about Robert’s advance directive reminded me that, although many have seen dementia, few can see beyond the obvious losses. That leads some of us to make questionable decisions—uninformed, pre-emptive decisions, often based on prejudice and fear—about our own future well-being.
Jim, a retired contractor, is in late-middle-stage dementia. It may be another two years before he reaches the end stage. In an advance directive, he said he would not want to exist in the state he’s in right now, but to all appearances, he’s had a change of mind. It’s true he can no longer read, has trouble constructing a sentence and has moments of frustration. He isn’t sure who this nice old lady is who comes to visit him each day. But he senses she’s someone he loves and enjoys her visits. He likes hearing 50s rock and roll, still melts when he sees a baby, and loves pizza and ice cream.
His directive, of which he has no memory, says his family and caregivers should stop feeding him at this point.
How can that be done, and who would be willing to do it? He loves to eat. He would have to be locked in his room during meals, but the rest of the time he would help himself to food wherever he could find it. His normal and healthy desire for food might now be called a behavior problem, to be controlled by medication.
It would be agonizing for his family to enforce the directive that now seems so out of tune with his mostly happy existence. Neither would the nursing home caregivers be willing to do it. They care about their patients. Besides, it’s against state regulations and nursing home ethics to deny patients food and drink.
We need to educate people better about dementia. We need to care for people better when they have dementia, not end their lives early because they were once afraid of cognitive decline.
And we need to recognize that the principle of autonomy, which gave rise to patients’ rights and living wills, isn’t the only moral value we have to guide us here.
We must also do no harm.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.